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Diseases

Genetic and Rare Diseases Information Center (GARD)

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Schwannomatosis


Other Names for this Disease

  • Congenital cutaneous neurilemmomatosis
  • Neurilemmomatosis congenital cutaneous
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Your Question

I have a segmental neuromatosis/schwannomatosis. The last 10 years the pain has been constant and gradually becoming worse. The last six moths have been dreadful. I would like to know what treatments work for others with the same condition. I have read some research work, but it is never anything like what I have got. I believe that surgery can be done? How successful is this? What medication works the best?

Our Answer

We have identified the following information that we hope you find helpful. If you still have questions, please contact us.

How might schwannomatosis be treated?

There is currently no accepted medical treatment or drug for schwannomatosis, but surgical management can sometimes be effective. Medication treatment with gabapentin or pregabalin and use of short acting opioids and/or nonsteroidal anti-inflammatories for pain can be successful for many patients. Pain usually improves when tumors are removed completely, although the pain may recur should new tumors form. Finally, surgery may put patients at risk of further neurologic problems. Therefore, surgical removal of schwannomas in patients with schwannomatosis is generally a last resort and is highly individualized and dependent on the size, location and complexity of tumors. 
Last updated: 3/14/2014

References
Other Names for this Disease
  • Congenital cutaneous neurilemmomatosis
  • Neurilemmomatosis congenital cutaneous
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.